Basic Narcolepsy Questions

Hi everyone! I am actually a Journalism student at Indiana University and I am writing a story for class on Women Coping With Narcolepsy. If anyone would like to help me out and answer a couple of questions that would be great! I will post the questions on here and you could message me privately with your answers or my e-mail/phone number for more information. If you could share your name that would be all I would need in addition to the answers.

1. How did you feel when you first got your narcolepsy diagnosis?

2.How did you know it was time to go to the doctor before you were
diagnosed with narcolepsy?

1. I was relieved when I found out I had narcolepsy. I was happy to know that I wasn't just lazy.

2. I knew it was time because I was falling asleep in traffic and pulling over 2/3 mornings a week to close my eyes for 20mins before work. I had already been tested twice for sleep apnea and my Dr kept telling me I need to get tested for narcolepsy.

3. I take Adderall 30mg and it's not really enough, but my Dr. keeps saying that I will be on it forever so he wont raise it now.

4. There are a few hard things to deal with, 1) is I'm a single mother of a 15 yr boy that is on the go all of the time and I have to say no a lot when it comes to driving him around.

2) being tired all of the time but I can't always fall asleep 3) Its hard when the brain fog hits at work

I know I am luckier then some I can wake up on my own in the morning, and I don't sleep all day. Cataplexy is not a problem either I think I have a couple symptoms like slurring my words and my head goes sideways.

#1) I was kinda surprised. My only ideas about N were what the media has fed the public about it, so I really wasn't expecting that one at all.

#2) I have struggled with fatigue ever since college when I basically just grabbed a few hours of sleep whenever I felt like, but I figured it was time to get more serious about seeking treatment when I normalized my sleep schedule and my fatigue, brain fog, and headaches kept worsening.

#3) I'm currently taking 200mg lamictal xr which helps with mood issues, and has greatly reduced the headaches and brain fog. I think the brain fog may be a kind of neuropathic pain in a sort of roundabout way. I also take sleep supplements with valerian root and 5-htp before bed, and I take Xanax twice daily to control anxiety, which came about due to a failed Xyrem treatment regimen, which caused a regression of old anxiety issues.

#4) Well I'd say mainly it's the intangible symptoms; the ways it has limited me cognitively and emotionally. I feel like there's a wall of sludge I have to tread through sometimes just to be able to complete a thought process. It's like the difference between taking a stroll and hiking through a marsh. And my emptional responses are constantly, just, well, wrong. I don't know any other words for it, but the things I feel and the ways I respond to things now do not reflect who I was before, and a lot of times, really don't reflect the person I want to be. I have a short fuse now, very little impetus to show kindness (I have to force it out of me), and a slight appetite for schadenfreude, which disgusts me.

Oh shoot, well I missed the part where you were only asking for women's experiences. Well, now you have an extra data outlier, lol.

1. Relieved. I new I wasn't lazy or crazy. I thought "great they are going to give me some medication and I will feel better." Hah!

2. Looking back, I have had symptoms since elementary school. I first went to the doctor when I started to wobble and fall. I also had a few hallucinations in the day. When my MRI came back and everything was fine, I did not persue it again for awhile. Then the sleep attacks started. I began to fall asleep at work. I had memory issues and would be unble to complete simple tasks because I could not figure out how (At the time I did not even link this to the sleepiness). It steadily continued to get worse.

3. 4.25g of Xyrem 2X/night and 25mg of methylphenidate 2X/day.

4. Everything is a choice now. I cannot do everything. It is a matter of resources and wakefulness is not one I have in abundance. I know that if I do anything for 1.5 to 2 hours (sometimes I get a bit more), I will need to sleep. My cognitive abilities will decline and if I continue to fight it I will fall asleep uncontrollably. The medication helps me to feel less cruddy, but the symptoms are always lurking. I hate the feeling that I am not accomplishing much.

Hi Kate, I actually went to IU as well....transferred and graduated from Purdue, but I'll still help out a hoosier!

1. How did you feel when you first got your narcolepsy diagnosis?

When I was officially diagnosed I was relieved to know what I struggled through daily was beyond my control and that I wasn't just lazy. But it's also terrifying to hear "chronic neurological brain disorder".

2. How did you know it was time to go to the doctor before you were diagnosed with narcolepsy?

I had actually seen my family doctor 2 years before my diagnosis (still in college) but my parents assumed I was just staying up too late, ect. and didn't want the sleep test. I was exhausted, couldn't stay awake in class, I'd read my lecture notes and my words would become gibberish from nodding off while continuing to write, really clumsy, and I had always sort of "sensed" things around me while I slept. After graduating I commuted 1.5 hours to work doing pediatric therapy and on too many occasions found myself on the rumble strips trying to make it home, but my real wake up call was when I dozed off in a session with a patient and fell asleep with hallucinations during an in service training video. Having no control of your own consciousness is a good indication of needing help!

3. What is your current treatment plan like?

I am on Nuvigil 250mg.

4. What is the hardest part of dealing with narcolepsy?

Though the actual disorder is physically tough, I think the hardest part is dealing with everyday life. It's not an issue I can easily keep private by nature of my responsibility working with children and heavy driving, but I don't always want to disclose my personal life. You don't look sick, so it's hard wanting to go out with friends and thinking about how lame you sound staying in because this is a not a disorder people really understand. It's hard to be tired, moody, forgetful, fearful of a funny joke in case you dead leg yourself, and have majority of people still assume you are just boring or lazy. It requires effort to maintain normal when you have to wonder if music is real or just in your head as you fall asleep while trying to balance fun with plain survival.

1. How did you feel when you first got your narcolepsy diagnosis?
Relieved! All the years of my family telling me I could stay awake if I really wanted to among other euphemisms for calling me lazy and my mom's resentment toward me for going straight to bed when coming home from college or dates were finally put in a whole new light.

2.How did you know it was time to go to the doctor before you were
diagnosed with narcolepsy?
I got mono the summer before my senior year in high school and I never got back the energy I had before it. During my freshman year in college I asked a doctor if I had "that chronic fatigue thing" but he didn't take me seriously. I didn't think to tell him that my college notes were sometimes gibberish (nor did i realize that I was entering level 1 sleep at those moments). He wasnt concerned and i figured he's the authority on all things medical, so i let it go but would ask other doctors -- one who suggested warm milk and masturbation which freaked me out!

Things got progressively worse for about a decade and I self medicated with 2 starbucks a day to get to and from work and getting progressively larger drink sizes, melatonin at night, bottles of energy shots, but I went through an intersection while asleep less than 2 minutes from home and woke up to honking cars. I went back to yet another doctor (who I had already talked to about chronic fatigue 2 months prior and was written off yet again) and he finally referred me to a sleep specialist.

3. What is your current treatment plan like?
I take Xyrem at highest allowed dosage and trying various tricyclic antidepressants to help limit cataplexy to find one that works with the least terrible side effects. My sleep specialist says that I may spend the next 2+ years trying all the different ones before finding the best one for me because it's a very individual reaction to these medicines and it just takes trial and error.

4. What is the hardest part of dealing with narcolepsy?
I don't know that I can pick just one!

Unlike most people on the face of the earth I can't put a game face of confidence on because cataplexy gets in the way. Its better now that ive learned to accept it but still, if I had to interview for anything it would be a disaster.

The second most terrible part is that my brain has gone to mush. My grandmother's memory works better than mine does now. It's like i have chronic Pregnancy brain that will never go away so I compensate by using evernote on my iPhone to store anything I have to remember.

Last but not least, my husband and I have chosen to not have children because of narcolepsy. I didn't want to risk going off my medicine (that really has changed my life so much for better) and chance not getting put back on them after having a baby because my health insurance could say that I "elected to go off of medical therapy" And we were told that we are not a very marketable couple to birth parents because of my chronic illness. I went through a dark grieving process over this, but looking back, I'm glad I don't have children because I don't have nearly enough energy for them.

We have our furry daughter (dog) instead and she likes to sleep as often as my body demands, if not more! I don't have to pick her up to soothe her and she'll never go through a rebellious teenage phase.

I see my friends and brother with their children and think how rewarding it must be to see them grow up but I have to keep things positive for my situation.

I love playing hide and go seek with my furry daughter in the dog park. It's the sweetest, cutest, best feeling in the world to see her when she spots me around the big hill in the middle and dashes toward me. In my mind, she's an inquisitive, smart, easygoing toddler.

She has pretty good vocabulary recognition so we can easily communicate with her and sometimes we have to spell things if we don't want to spoil a surprise. :-)

I'm not having a good day, so please forgive any spelling mistakes or if things seem a bit messed up.....

1. How did you feel when you first got your narcolepsy diagnosis?

I was terrified, and relieved. Relieved because I had an answer, and terrified because I was told I had a 100% chance of developing cataplexy.

2.How did you know it was time to go to the doctor before you were
diagnosed with narcolepsy?

I first went to a counselor at my university when I was 21, because I was teaching everyone else the courses, yet barely passing them, because I got major brain block whenever I tried to take a test, and noticed something in my brain was messing with the word order of what I was reading when studying, which messed with the meaning. His response was to give me an IQ test, and tell me I'm fine, and I should be getting the grades I was getting, despite my not being able to answer questions I knew I knew the answer to ex. I had a minor in Religious studies and grew up Catholic, yet could not tell him what the "Book of Genesis" was about.

It wasn't until 5 years later (?) that I began falling "asleep" at work, even while talking to people, and wasn't completing tasks, that I mentioned it to my doctor. She got me into see a sleep neurologist immediately.

I say, "asleep" because it's not really sleeping the way other people sleep. It's more like being drugged and passing out. So it really pisses me off when doctors use the word "sleepy" to describe one of the symptoms. It's not sleepy at all, it's drugged.

3. What is your current treatment plan like?

I'm not on any medication at the moment, and haven't been for about 10 years. A lifestyle change helped dramatically. So I only socialize a maximum of twice per week, eat whole, mostly organic, foods, never set an alarm, sleep when I'm tired, eat when I'm hungry, work for myself, creating a fairly slow paced day, spend a lot of time in nature, do energy work (I do this for a living) on myself, and stop if I notice any symptoms whatsoever, no matter what I'm doing. And since a major trigger for me is a low core body temperature, I make sure I never get that 'cold-to-the-bone' feeling.

I was on Modafinal years ago, and it kept me from sleeping, but there was a shadow self in me that I could feel was sleeping. It felt fake, and I was more exhausted being kept awake in the end. I stopped more because the drug plan I'm on refused to cover Modafinal and insisted on my taking 40 year old drugs that have ten times the side effects, despite Modafinal already being proven to "work" for me.

4. What is the hardest part of dealing with narcolepsy?

Dealing with my ego, really, especially if a particularly bad day happens following an exceptional week, or even month where I was productive like "normal people". On the other hand, when I'm not paralyzed, I appreciate my body as though a miracle has happened, and when my brain is working at what feels like lightening speed, compared to brain-fog narcoleptic speed, and is clear, I totally take advantage.

Money can be a problem, because I can't work full time for a long time, otherwise I will crash for weeks at a time, having ongoing cataplectic attacks mixed with heavy narcoleptic attacks continually the whole time. If I pace myself, and know my limits, I won't experience this, but I won't make as much money either. I choose the latter.

Really though, now that I think about it, it interferes with me being able to pursue my real dreams. In interferes with me living the life I know others would take for granted.

1. How did you feel when you first got your narcolepsy diagnosis?
I was diagnosed 7 moths ago. At first I was very relieved, they figured it out-it had a name-narcolepsy. After so many dr's telling me chronic fatigue, depression. I knew it was not depression and I had to keep pushing and pushing to get help-basically begging. At first each dr was eager to help, but when it got to the "I don't know what it is phase", they were done trying. I was even laughed at when discussing what I now know is cataplexy. I felt like it was such a battle. Then as the last result after I insisted I need answers, the neurologists suggested a sleep study. At first I ignored it. My thoughts, what does a sleep study have to do with anything, just more test and no answers. Then another dr said, it wont hurt anything to try. So I did. much to my suprise- and the sleep dr -answers. Narcolepsy, cataplex, sleep apnea. If I didn't pursue further they would just think depression. Next it was the getting educated phase, and starting the meds. It really didnt sink in then either. Now It had a name, I had the facts, know what Im dealing with. Where I am now, it has sunk in,no cure. Always going to have to deal with this, always going to have so many limitations. And I feel so isolated, no one around me can relate. It effects my life 24/7.

2.How did you know it was time to go to the doctor before you were
diagnosed with narcolepsy? August 2011 my immune system crashed, then lost my hearing in one ear, tinitius and unbelievable fatigue and yawning. Everyday tasks were getting harder and harder. Diagnosed October 2012, said to be triggered by prior health problems caused by chicken pox blister on ear from childhood.

3. What is your current treatment plan like?
Started adderral, added then discontinued xyrem, now trying provigil. Along with planned naps, healthy diet , and exercise.

4. What is the hardest part of dealing with narcolepsy? Isolation, no one around me can relate. Need support group! Need to know someone else dealing with this.

Shocked. I've struggled with varying degrees of sleepiness since high school, but it only became unmanageable and dangerous to my health (frequent instances of almost falling asleep while driving) about a year ago. I assumed the reason for my daytime tiredness was poor quality of sleep at night because I noticed I was waking up a lot. Narcolepsy wasn't even on my radar.

2.How did you know it was time to go to the doctor before you were
diagnosed with narcolepsy?

I was in school full time and working as a server in a restaurant part time. I was in school for pastry arts, so I was on my feet there and at work. On days when I did both, I would sleep through my entire 3 hour break. I was constantly tired even though I slept 8 hours or more at night and experiencing muscle fatigue to the point that I sometimes had to crawl up the stairs to my bedroom after night shifts at work. I could no longer count on one hand the times I nearly fell asleep while driving.

3. What is your current treatment plan like?

I'm currently on 25 mg of Adderall Xr. So far, this medicine has worked the best (also tried brief samples of Nuvigil and Ritalin). At night, I take 300 mg of Gabapentin to reduce hypnic jerks or sleep starts. In addition to medicine, I go to bed and wake up at the same time every day and eat few starchy carbs and sugar during the day because they tend to make me tired.

4. What is the hardest part of dealing with narcolepsy?

Wanting to have my old energy, motivation, and life back and knowing that it's just not possible. I can do my best with lifestyle changes and meds, but I still don't recognize myself in this person who has barely enough energy to make it through an 8 hour work day (and frequently doesn't make it through an 8 hour work day). Thinking about the person I pictured I would be when I was younger and the things I thought I would do and knowing that isn't and won't be a reality for me.

Interests:Food!!! Hopefully food free of additives and preservatives, Talking to people, water polo, anything to do with water, gathering information, helping others, working out, anything but sitting down doing nothing (like I am doing right now)

Posted 16 November 2014 - 09:43 AM

My name is Sylvia, I'm 23, and I was diagnosed a few years ago

1. How did you feel when you first got your narcolepsy diagnosis?

Relived! I was actually in taking a class and sleep disorders got brought up before I got diagnosed and they got narcolepsy confused with catolepsy, so when I got diagnosed I was confused how I could have it. lol

2.How did you know it was time to go to the doctor before you were
diagnosed with narcolepsy?

A ton! I have been diagnosed with seizures seens I was 11, they always thought my sleepyness was because of my seizure meds or because I was not trying hard enough. I had a doctor appontment set up with a sleep doctor in 11th grade but I got mono, so that got blamed for the increased sleepiness. It was not until I was 20/21 that I actually got diagnosed.

3. What is your current treatment plan like?

I am taking xyrem (3.75 2x night), I am pregnant so my doc wont refil my persription though so I will soon be on nothing.

4. What is the hardest part of dealing with narcolepsy?

The loss of memories for so many years, and the hurt from that time of not feeling good enough feeling of being a failure. I would do okay for a week maybe then get behind, I thought I must be stupid or lazy, and my teachers and everone told me I was smart and I believed them most of the time because I could do things if I tried really really hard but it would always come crashing down and so I thought I must be weak and lazy. It is really hard to get over feeling like a failure.